Giving Family Caregivers A Seat At The Policy Table

When Congress and the White House develop health or long-term care policy, they hear plenty from providers, drug or medical device makers, and scores of other lobbyists and advocates for various interests. But they rarely hear from family caregivers—those people in the trenches who struggle every day to assist their loved ones. On Monday night, Congress passed a bipartisan bill that may give family caregivers a seat at the table.

Called the Recognize, Assist, Include, Support and Engage (RAISE) Family Caregivers Act, the bill would require the Secretary of the federal Department of Health & Human Services to develop a national strategy to recognize and support family caregivers. To help design that plan, it also creates an advisory council that includes family caregivers as well as representatives of government and business. The bill was sponsored by senators Susan Collins (R-ME)  and Tammy Baldwin (D-WI) and representatives Greg Harper (R-MS) and Kathy Castor (D-FL).

Among the issues that the strategy would address are expanding person- and family-centered care, training and respite services for family caregivers, policies to help support caregivers at work, enhancing the financial security of caregivers, sharing information about innovative caregiving models, and assessing the effectiveness of federal family caregiving programs.  The HHS secretary is required to produce an initial report within 18 months.

The advisory panel will have 15 voting members, including people representing family caregivers; older adults and people with disabilities; veterans; health care, social services, and long-term care providers; state and local governments; direct care workers; and employers. Representatives of several federal agencies will serve as non-voting members.

RAISE creates a real opportunity. As Washington considers issues like overhauling Medicaid or the broader health system, or even developing a big public infrastructure bill, it can get an important—and different—perspective by hearing from those receiving and providing care. And those voices too often go unheard.

The idea is similar to The National Alzheimer’s Project Act (NAPA),  which was created in 2011. It required development of a national dementia strategy and also established a public-private Advisory Council on Alzheimer’s Research, Care and Services. Very different goals but a similar design.

There is a lot about the NAPA initiative that I have not liked, especially its early excessive focus on increasing government subsidies for drug research and its relative lack of interest in those who already have dementia and, yes, their caregivers.  But the project has achieved many of its goals—especially increased government research funding.

The NAPA advisory council has been relatively successful because it includes a number of high-profile experts and because the initiative has the backing of drug companies and universities that seek research dollars. It will be tougher for the RAISE Act, since family caregivers have no deep-pocket backers.  And, let’s face it, Washington is full of advisory committees whose reports do little more than gather dust on shelves. In addition, the law is only temporary—it expires in five years—and it includes no funding.

Still, at a time when Congress seems uninterested in doing much for older adults, RAISE is a glimmer of good news. If the administration takes it seriously, it is an opportunity to hear from caregivers and those receiving care. And it is a chance to better tailor policy to help those it is intended to support—and not just give these issues lip service.

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